Hi Jane

I also have just been diagnosed with cancer in the RHS Tonsil area ( I dont have any they were romoved as a kid 60 years ago) to say I am scared is some understatement also I am so emotional, I have no experience of hospitals and everthing scares me to death. I have a tosil biopsy next week , I have had biopsy of node in my neck<positive> and a PET/CT scan showing the primary as tonsil area.

First I was told it would be just surgery, then surgery and Radiotherapy and following the PET looks like just Radiotherapy will be used although they want to see the results of MIR scan before final decision.

As far as I know and was told Radiotherapy is very pecise although it will destroy some of the good guys near the target area but it is not a blanket area that is zapped.

I am scared of everthing and anything, especially the PEG thingy and the side effects that will come later, I have a terible gag reflex in my mouth so its the worst possible place to have people poking me about.

But we have no choice and have to face it head on. Keep strong!!

Hi CB,

Try not to worry. I'm just recovering from tonsil cancer and whilst the side effects of radiotherapy is no joy the survival rate is one of the highest of all cancers.

You'll probably get 7 weeks x 5 days (Mon-Fri, weekends off!) of radiotherapy (10-15 mins & painless), plus a dose of chemo on your first day and one about 5th week in. It's Grade A world class treatment. They'll probably test you for a virus called HPV, which if you have, bizarrely increases your survival rate further.

You'll probably need to arrange lifts after first week or so of treatment, as you'll feel *** for driving. Get a rota in place for people to take you as soon as you get your treatment schedule. Taxis other option if hospital not too far away, wouldnt recommend public transport. 

Pre-treatment you'll have a PEG or some other type of feeding tube fitted to your stomach as you'll be living on medical nutrient milshakes for a while as your throat being nuked by high powered X Rays will be "closed for business". Eventually this will be taken out post treatment and you'll wean yourself back on to normal food over a few months, sloppy stuff to start, then more lumpy stuff then tougher stuff to chew and swallow still later (I'm still on semi-solids 4 months after treatment but PEG removed).

Tips :

1. Don't worry about Radio or Chemo they aren't painful

2. If offered some "sedation" for your PEG fitting, take them (benzos) as it can hurt a bit

3. You'll probably have to a have a few teeth out on the side of your cancer. These are any teeth deemed at risk of future extraction as they can cause problems with your jawbone if extracted after radiotherapy. Restorative denistry is an option, I'm just chewing on one side of my mouth at present.

4. Worst time is last week of radio and the week that follows it. After that you'll gradually start to feel better.

5. Relax, it'll all be fine. They successfully treat up to Stage 4 tonsil cancer and once it's gone it doesnt come back.  

Oh, and I lost my wife to suicide early in my treatment (unrelated, Bi Polar depression) so if I can do it, anyone can.

Hi Maria 

umm I got my results from my oncologist 10 days after the scan. Was it a pet ct scan or a ct scan ? I was uve. My appointment before my scan so maybe ring the hospital. Don’t fret am sure all will be fine. Try and sleep tonight let us know what you hear and good luck am sure once agin all will be ok. how are yiu progressing ?

Hazel xx

Hi hazel was a pet/ct I thought I would have to see consultant but apparently not , bloody horrible this waiting , just hoping all ok my last two cameras down the throat were clear so hoping that's a good sign apart from that not too bad , see dietician couple weeks ago , when I had camara down , they were but concerned about my weight but I've managed to put on 5lb since then so hoping they will take my feeding tube out next time , sitill have some sores on one side of my throat , but apart from that and the gunk and the dry mouth I'm ok lol , how about you hope all ok xxxx

Hi Maria ,like younsay  your cameras have been clear so that’s a good indication. Dry mouth still,plaguing me got home on Tuesday it’s dark grey  and rainy as you know lol. 

Had flu jab and acupuncture on Wednesday they knocked me a little for 6 but am good really.how many weeks post treatment are yiu now ? I had my scan at  17 weeks Dr  wanted to make sure that all hot spot s would have gone .sat here trying to eat my favourites plain crisps I know mouth will be dry but a girls got to have some pleasures. 

Please let me know when you hear something,just ring tomorrow not sure if they give them overnight phone know my dr liked to *** at the m d t meeting then tell his patients face to face ,but as we know they are all different  the pet ctbscan is the best scan to have a special it does show a through picture  

onwards and upwards Look how far youve  come  

Hazel xx

Bless u I could kill for a bag of crisps lol , I finished my treatment middle August , I've got a feeling they won't tell me over the phone , but your right we have both come along way , it's only when u stop and think that you realise and I suppose it is still early days yet , well will know soon I hope will let u know tomorrow if I find out.  Off to bed now the morphine kicking in lol so hopefully will get couple hours sleep , enjoy those crisps have one for me haha take care speak soon

maria xxxx

Night night private’s message me tomorrow if yiu feels better doing that. 1/2 way down a 30 gram packet used to take me 4 mins niw can take up to an hour !!!!  Make s the agonies worth it lol. H xx

Haha well you enjoy them lol , ok will do thank can can always rely on you for lovely words and advice take care xxx

Night xx

Goodnight and thank u xxxx

Thanks for posting my husband has had the same diagnosis and is about to start treatment in a couple of weeks. Feeling pretty apprehensive about it all so any information is really helpful. 

Hi Herbie

So sorry to hear about your husband , is he having chemo and radiotherapy ? Treatmant itself is quite painless , it's the side effects of the radiotherapy that are pretty harsh , I finished my treatment on the 16th August this year and still have side effects but if it's a choice of those or living I choose side effects , I do have down days , the best person to talk to it Hazel ( radioactiveraz ) she is so lovely and a year ahead of me , she is full of great advice and tips on how to deal with things , and cheers me up when I'm having a s++t day .  She also has a blog  from the start of her treatment it's worth a read , Keep in touch and add me as a friend if u just want a chat , hope all goes well and as I said keep in touch xxxx

Hi Herbie

So sorry to hear about your husband , is he having chemo and radiotherapy ? Treatmant itself is quite painless , it's the side effects of the radiotherapy that are pretty harsh , I finished my treatment on the 16th August this year and still have side effects but if it's a choice of those or living I choose side effects , I do have down days , the best person to talk to it Hazel ( radioactiveraz ) she is so lovely and a year ahead of me , she is full of great advice and tips on how to deal with things , and cheers me up when I'm having a s++t day .  She also has a blog  from the start of her treatment it's worth a read , Keep in touch and add me as a friend if u just want a chat , hope all goes well and as I said keep in touch xxxx

Thanks so much.  He’s got 6 weeks of radio with chemo once a week. Team at hospital are lovely but although he’s pretty brave about the whole thing he had a bit of a panic when they were measuring the mask as he thought too much about the fact it was pressing on his face. I’m trying to teach him mindfulness which is ironic as he has always been really sceptical about all that. I’m also a bit worried about the journey. Hospital is quite a long bus ride away. At moment I’ve said I will pick him up on chemo days but I’m thinking I will have to take maybe ten last 2 weeks off work. I’m trying to keep it to a minimum as I *** think they will pay me. Any tips re the mask would be great

Bless him , the mask can seem daunting , but honestly it's not as bad as you think , and you are only in it for roughly ten min that's all it takes , I think it's one of those things u just get used to , as for getting to hospital , I was 2.5 hours away , at first was gonna stay in hospital accommodation but only lasted 2 days got homesick , but found out if u have cancer you can get transport to and from hospital , I just asked my gp , they gave me number , and u just book the times u want , on radiotherapy days they would just wait for me , I know my husband wouldn't be able to take that much time off work , and first few weeks I suffered sickness from chemo so not nice being on public transport xxxx

Hi this is Hazel I am 16 month post radiotherapy for tonsil cancer the treatment is brutal no point saying otherwise the recovery can be long the end result is usually excellent so keep that in mind. The mask and radiotherapy tell hubby to treat it like a friend it’s going to save his life I used to say good morning to mine I gave it a name and I told it that the next 12 min she we’re going to hurt it more than me but that was ok as it was doing a good job. Might be Mumbai jumbo but try anything the radiotherapy transnational are shrillness , I took my own cds in tomokay , plus let my mind wander in bikes rides , walks anything to distract. I have a blog with lots of hint and tips about my experiences wwww.radioactiveraz.wordpress.com

re transport donthe hospital offer patient transport ? some days a bus journey may be too much m is there anyone who could  drive you there ? You really need all the help you can get, remember where the treatment is our mouth really affects every facet of life , eating sleeping , drinking breathing  we are all different and hopefully he won’t feel rough all the time ,the first 3 weeks are not too bad but then it can really hit hime  don’t mean to scare you but no use saying it’s a walk in the park  it’s doable but not easy  is your hubby h p v positive do you know and what turnout size is was T2N2NM with affected lymph nodes 

keep in touch send me a friend request if u want to chat  privately Hazel x 

Morning Hazel , I knew you would come through for this lady bless you , hope your ok xxxx

Hi Maria yes am ok justbiff with grandson to York seeing friends will message you later. But Yeo had fruit tea cake toasted thus morning really enjoyed it not often I say that but it was yumnyb h xx

Oooh lovely are you near York , I love it there, that's good glad u enjoyed it , I had my ready brek yesterday , first thing I e eaten , def had a bug last week felt bloody awful , but I enjoyed that was lovely , also just quick question do u have trouble with nails I had both my big toe nails fall off , then yesterday took nail varnish off and my thumb nail had gone green ???? Have lovely day talk later xxxx

Please forgive me if you have already had this message.  I though I had replied but then it disapeared  Think I preseed the wrong button!

Thanks for the info about the transport that's so helpful xx

Hi Herbie

no problem bless u sure you have other things on your mind , your more than welcome.but for me it was the best thing ever , because you and your family can sort of carry on a normal ish life , because you still need to live my husband self employed and we couldn't afford him to take loads time off , so it was perfect for us 

maria , keep in touch see hazel gave u some advice she is brilliant she should be a counciler because she has so much knowledge , she's kept me going a few times , so worth listening to , but any help or even if it's just a chat   , we are always here so don't feel alone xxxxx

Hi Hazel and thanks.  We will def give it a name although he has already given it a few choice ones!

He is T3 (but only just apparently almost a 2) N2 (but one is very small) and thankfully no M's as yet. Still waiting to hear if it's viral or not as I understand that makes a difference to how easy it is ti treat 

I'll def be having a read of your blog but from the picture it looks like you are doing fine.

This chat has been so helpful - we will ask about the transport

Take care

Hi nm  is no metastatic ie spread to other organs so we deffo don’t want that , T3N2 isn’t a million mikes different from mine , yespmthe h p v status does help,as the rumour responds well to treatment m saying that I know plenty of others who have successfully gone through treatment  ithoutbthe h p v status .and like me come out the other side. 

This time next year yiu will look back at this time and Ben well in the waybtonrexover ,positive mental attitude is what’s needed along with anything else yiu can throw at it ! 

Radiotherapy doesn’t hurt it’s just the side effects but we are so lucky having a brill N H S and at cancer level they aren’t spot in , where’s in U.K. are your? 

Hazel, please keep in touch